During the analysis 11 subcategories, four categories and one unifying theme were identified. The theme, Living an ordinary life—yet not, was interpreted as the core of how children experienced their everyday life living with a parent with deafblindness, covering the content of the subcategories and categories. The first part of the theme, i.e., Living an ordinary life, relates to the children’s descriptions of being part of a family like any other whereas the second part,—yet not, describes their experiences of a somewhat different everyday life. An overview of the theme, categories and subcategories is shown in Figure 1.
Figure 1. Overview of the subcategories, categories and theme.
A family like any other
Living with a parent with deafblindness was described by all children as having a family like any other. This category is characterized by Having the same family life as their friends, Acting like other children and It is what it is.
Having the same family life as their friends
All children living with a parent with deafblindness said they had the same family life as their friends. They said that there was nothing especially good or bad about having so. Instead, there were both positive and negative things connected to this and the deafblindness did not affect the child’s family life. One child stated:
There is nothing we can’t do because my parent has deafblindness. My family does the same things as my friends' [families of their friends]. (Interview no 17)
Having the same family life as their friends included for example, going grocery shopping with the parent or that the parent went shopping by themselves. The children said that they watched television or played games with their parents in their spare time. Other things interpreted as showing they had the same family life as their friends varied between the children, but could include that the family went on vacations, doing the same things as their friends, having pets, that both of their parents attended meetings at school, and that their parent was independent and managed to run their everyday life by themselves. In most families, the entire family helped out with tidying up, and some of the children mentioned doing the dishes/laundry or cooking. The meals prepared by the parents were described as equally good, regardless of whether the parent had deafblindness or not.
Acting like other children
The children described that they did the same activities as other children such as playing with their friends, riding a bike, listening to music, watching movies, playing the piano or being in their room reading a book and one of them described it like “they [my friends] do the same things as I do” (Interview no 6). Some of the children said that they, just like their friends, did not practice any sports, or that they did not participate in any leisure time activities. The children said that they did not talk so much with their parents regarding their personal problems; instead, they talked with their friends, they spent time with their friends at home or at their friends’ homes. Furthermore, they wanted to be treated like anyone else, that is in the same way like any one of their friends.
It is what it is
The parent’s deafblindness was a natural part of the children’s daily life and the parent’s disability was described as an integral part of their lives. The deafblindness was not reflected upon as something peculiar by the children and it was described as “nothing special” (Interview no 5), “it’s nothing” (Interview no 14), “I’m used to it” (Interview no 12), “nothing weird or different” (Interview no 7), and “it is what it is” (Interview no 14). The children stated that their friends knew, or at least that they thought that their friends knew, that their parent had deafblindness. Since having a parent with deafblindness was a natural part of the children’s lives this was something they did not always tell their friends since they did not think they would have to. This was instead something their friends eventually found out by themselves.
Different everyday life
Although the children stated that they lived a life like anyone else, they also said that they were experiencing a different everyday life. This included Acknowledging differences, that they were Adjusting to the parent’s needs, and that the parent’s deafblindness led to a Financial strain.
Almost every child stated that their everyday life in some aspects differed from those of their friends. The differences connected to having a parent with deafblindness were described in both positive and negative wordings. The positive differences included that they were allowed to skip the queue when going to amusement parks, could take a taxi for a small amount of money or go to special camps for families with deafblindness and meet with friends living under similar conditions. Some of the children said that they liked having a parent that was considered different and that they themselves liked being special/different. On the negative side was the fact that the parent did not have a driving licence, resulting in that it took a lot of planning if the family wanted to go somewhere.
Strolling down the town with the parent could also be a negative experience, since other people might look at them, pointing and commenting. Some of the parents had a guide dog and this was experienced as both positive and negative by the children. Positive since the dog had relieved the burden for others in the family a little by making the parent with deafblindness more independent. One child (Interview no 11) said that “it [the dog] is my parent’s eyes”, and that “it [the dog] is helping my parent”. The negative emotion connected to the guide dog was that the dog drew attention to them, which was also reported if the parent used a cane while walking.
Some of the children stated that they had to take on an adult role in order to manage their everyday life due to the parents’ deafblindness, as described by one child below
I had to take on so much responsibility at home, so I was already like an adult at home with my parent all the time I was there. I was the one who always cleaned the house or I mean the apartment; it was me who cooked the food and did the laundry and the dishes and everything. It made me have an adult role when I was with other kids and they didn’t understand me. They didn’t understand me, because I knew they liked to run around and play, but I never did that when I was a kid. Well of course I did, but I didn’t understand it and it was very frustrating and confusing and stuff like that. (Interview no 8)
A few of the children talked about school and doing homework. They said that they had difficulties managing school since their parent could not give them the same help with their homework as their friends got from their parents.
Adjusting to the parent’s needs
Some of the children said that they needed to adjust themselves to their parent’s needs, as stated by one child “I have always adapted myself to my parents’ needs” (Interview no 7). Adjusting to the parent’s needs included the need for adapting the communication method. The children described that they adapted the communication method in accordance with the parent’s needs, and they said that they sometimes communicated by spoken language and sometimes by sign language. One child described using spoken language when communicating with a sibling, but both used sign language when communicating with their parents.
we [my sister and I] use sign language when sitting down at the dinner table with our parents, but we use spoken language if we sit there by ourselves. (Interview no 15)
Some of the children stated that when the parent was attending meetings, the theatre, or graduation at school a professional interpreter was always present.
The children also described that they had to put things back in their predetermined places so that the parent would be able to find them without seeing, creating a sense of security for the parent. One child had to move to another city because the parent wanted to live close to his/her own mother when the family situation changed.
Having a parent with deafblindness might lead to financial strain for the children. One child said that one of the parents had to work a lot of overtime to survive financially since the other parent was unemployed due to deafblindness, and one child said that there were a “lot of expenses involved when being deafblind” (Interview no 14). Another child said that the parents had taken a music instrument for repair and that they could not afford to pay for it when it was mended, which made the child sad, as s/he liked to play the instrument.
Being there for the parent
Being the child in a family where at least one of the parents had deafblindness meant being there for the parent by Helping the parent and Protecting the parent from harm.
Helping the parent
Helping the parent included many things and was something many of the children said that they wanted to do. It could involve things like helping the parent with shopping for groceries, finding things at home, being the parent’s eyes by guiding the parent, interpreting or informing other people that “my parent has deafblindness so that is why s/he did not see you and therefore bumped into you” (Interview no 12). Helping the parent also included being the parent’s eyes when shopping for clothes, or acting as a counsellor, listening to and supporting the parent.
Often my parent [with deafblindness] feels bad, and usually in our family no one wants to talk to my parent then because s/he just talks negatively and it is a bit difficult. So, when my parent feels bad then s/he comes to me and talks a little. And I act as my parent’s ‘counsellor.’ (Interview no 1)
Protecting the parent from harm
Some of the children described a willingness and preparedness to protect their parent from harm. This was done by keeping the home tidy and packing away their toys if they had been playing, as stated by one of the children “I make sure that there are no toys in the way since this might cause my parent to trip” (Interview no 16). But it also involved the children putting themselves in front of the parent to prevent them from tripping when out for a walk, or informing the parent that something was blocking the way so that the parent could go around it.
Protecting the parent from harm also involved making sure that the parent was using their white cane when out walking, or assisting in putting on a [reflective] vest when going skiing for example.
Being emotionally affected
Feelings of frustration, Feelings of compassion and Need for support were the subcategories interpreted as describing how the children were emotionally affected by living with a parent who had deafblindness.
Feelings of frustration
Since deafblindness affects both the person’s sight and hearing the children said that there could be misunderstandings about different situations, which in turn led to frustration. Such a situation was described by one child when doing homework. As the parent could not clearly see what was happening, they sometimes accused the child of playing with his/her tablet instead of doing the homework. This accusation made the child frustrated since s/he actually was doing the homework. Other situations when feelings of frustration occurred were when the children had to repeat themselves several times since their parent did not hear what was being said, or having difficulties being patient since everything took much more time when having a parent with deafblindness, for example, shopping at the mall or when taking a family trip.
Most of the frustration was, however created in relation to other people who did not understand what deafblindness implies. It could be the cashier at the grocery shop who did not know how to approach the parent, or when other people reacted with fear of the parent, possibly due to their own uncertainty of deafblindness. There was a thin line between frustration created by the ignorance regarding deafblindness from other people, and the frustration created when other people asked too many questions when trying to understand how the parent was affected by the deafblindness. The insensitivity from others also caused frustration.
Perhaps it is not appropriate to tell me that you would commit suicide if you were deafblind. Others have actually told me that many times: ‘but Gosh what a pity that your parent is deafblind. If I were deafblind I would have committed suicide a long time ago’. This makes me feel very uncomfortable and really sad and I think: ‘Does my parent want to commit suicide or is s/he doing well?’ (Interview no 11)
Feelings of compassion
Having a parent with deafblindness created feelings of compassion among the children. The children said that they felt sorry about their parent’s inability to see and hear, and that they described what they saw or heard for the parent in order to facilitate for a shared picture of the reality. It could for example, be a description of the colour of the sky, the patterns on the wings of a butterfly, or the sound of birds singing in the trees. Some of the children said that they perceived that their parent was excluded due to the deafblindness, leaving them lonely and almost without friends.
The children experienced that the deafblindness helped them become close to their parent and family, and they enjoyed spending time with each other. One child stated that
I often go to town with my parent and this is not usual among other teenagers. They do not want to go with their parent, but I think it is nice. Just because s/he may not be able to go to a clothing store and find things s/he needs, so then we can go shopping together. (Interview no 14)
Need for support
Some of the children stated that they had not been offered any special support in school or from a counsellor due to their parent having deafblindness. Since some of the children stated that they believed that they had difficulties managing school due to the lack of help from their parent with their homework they believed that they would have benefitted from some special help in school. Despite this, some stated that they did not need any special support and some children expressed a need for emotional support; not only for themselves but also for other children experiencing the same situation as themselves. The present emotional support was mostly given by family and friends, “I get the support I need from my friends” (Interview no 5), and in some cases from the school, “I´ve talked a little with the school nurse regarding how it is to have a parent with deafblindness.” (Interview no 9).